Sunday, February 21, 2016

I don't have a lot of time and I've been putting this off for a while...

We're going on quite a few adventures this year. My knee isn't 100% yet, but I can move around and carry pretty well. Elena's knees are in a "holding pattern" of sorts, so it seems like we can put off surgery for this year (keeping fingers crossed!).

I could really use your help, Doodlers in blogland!

In no particular order, we will be visiting Atlanta, GA; , Berlin and Munich, Germany; New York, possibly Chicago, IL and maybe one other trip this year in addition to typical family occasions.

The domestic trips will most likely be by car or train; Elena has never navigated a big city (like NYC) so I'm not sure what to expect in terms of how many blocks is too many vs. cab rides. I feel like the kids would love the NYC subway experience but I'm worried about navigating the crowd and steps with so many people. How do you get around so many curbs/bad sidewalks with a wheelchair/stroller/crutches? Do I bother bringing her wheelchair (not to much of an issue if we drive) or do we just use taxis? Are there certain events that are great for kids--and should I be concerned about crowds?

The overseas trip is a huge deal; we've never traveled as a family overseas, and the last time we went anywhere as a family on a plane Elena could still fit into a stroller. We are not planning on bringing her wheelchair or stroller (I figure we can rent one?) and I'm not sure how much walking is involved, or what sort of transport we will need. If you have any advice for plane/train travel, or Berlin/Munich attractions/mobility advice I would *really* appreciate your comments! Feel free to comment below or email me at cpmom2009 AT yahoo DOT com.

Thursday, February 18, 2016

Elena knows (and approves) everything I write here, so I've thought long and hard about what I should post.

The reality is, I'm having a rough time.

Rather than go into detail about every mundane thing, I'll wrap it up like this. We spend a lot of time trying to teach Elena concepts, skills, self-care, etc. We give her opportunities, and try to help her make some of her own. But...they don't stick. She's like...a sieve.

Math concepts we worked on, and scored well on, vanish. She repeats everyday tasks four times because she didn't pay attention to get it done the first time--or second, or third, even when she's in a good mood and has no outside distractions. She doesn't seem to care that her actions (or lack thereof) hurt other people. Her idea of problem solving is nearly nonexistent.

She's had at least two new assessments (OT, which I should probably elaborate on in another post) and they have been helpful. Right now we don't have time for any new appointments (extra therapy, tutoring, sports, or other enrichment) b/c she has Drama club 3x/week (not all rosy there, either, as her involvement with the play and her castmates is lacking) and fitting homework and home life is time-consuming enough.

I wouldn't say these observations are new. I would say I am extremely discouraged that they have persisted so long, with very little improvement.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.